Lightheadedness..... what helps?

Discussion in 'Fibromyalgia Main Forum' started by twerp, Nov 22, 2006.

  1. twerp

    twerp New Member

    Happy Thanksgiving Eve everybody,

    My first symptom of CFS, and the most troublesome over the years, is lightheadedness. Not dizziness, not vertigo, but the feeling that I may pass out.

    I have been on Klonopin for years, and it has helped tremendously. However, lately, it doesn't seem to work as well as it once did.

    Does anyone else suffer with this? And, if so, what have you found that helps?

    Thanks & Hugs,
    [This Message was Edited on 11/22/2006]
  2. mezombie

    mezombie Member

    NMH, Orthostatic Intolerance (OI), and other forms of dysautonomia can cause this. Basically, blood is not getting to your head as it should if you have any one of these conditions. The good news is that they are often treatable and that you can make lifestyle adjustments that can help, as well.

    Have you had a tilt table test? This is used to diagnose these conditions. You would be strapped to a padded "table", then the table would be gradually raised until you are upright. Your blood pressure, heart rate, and other vital signs are monitored.

    What's looked for is a drop in blood pressure without a corresponding increase. Healthy people's blood pressure would go up to compensate for the need for blood in the upper extremities when standing.

    Your doctor can also do a "poor man's" test by having you lie down for a while, taking your blood pressure while you are horizontal and again at intervals as you stand up.

    People with these conditions often find their symptoms are helped a lot simply by increasing their salt intake. There are also a number of medications that help with this, if that's what you have. Beta blockers help some, also small amounts of Fludrocortisone and Midodrine also have been used.

    Two Johns Hopkins Univ. medical researchers, Dr. Peter Rowe and Dr. Hugh Caulkins (sp?) discovered this was common in CFS patients. They also came up with some treatment options.

    I know there are materials on the web on this, but am too sick to find and post them for you right now. You might try

    Your doctor may also want to talk to one of the researchers at JHU.

    I hope this helps.

    P.S. I have NMH, and was diagnosed with a tilt table test. Neither salt nor beta blockers helped me, but I saw a big improvement when I started taking 0.1 mg Fludrocortisone in the a.m. After a a while it seemed to stop working, and I added 5 mg Midodrine. As with all treatments, what works for one person doesn't necessarily work for another, so one has to be patient and try different treatments and different combinations.
    [This Message was Edited on 11/22/2006]
  3. twerp

    twerp New Member

    I have had the "poor man's" test that you describe and my blood pressure seemed to react normally. I requested a tilt table test, but was told that was not necessary...

    I will check out your other recommendations.

    Thanks again, and I hope you begin to feel better very soon.

  4. Andrew111

    Andrew111 Member

    I have lightheadedness, and feel like I'm going to pass out. But I never pass out. I just feel very spaced out, and it makes it difficult to walk. This used to only happen while standing. Now it happens sometimes while sitting.

    I had a tilt-table test and it came out normal. Also, once while I was feeling very lightheaded on a medical visit, I asked the nurse to take my blood pressure standing up. It was normal.

    BTW, have you seen any difference in terms of when you eat or what you eat. I'm trying to look at this, but I see no pattern yet.
  5. twerp

    twerp New Member

    Andrew, I have not noticed any patterns as to what, when, or how much I eat. Sometimes, I think that if I just eat a little something it will help, but it doesn't.

    I have recently started avoiding carbs as my blood sugar was elevated last time it was checked, but that is not making a difference either.

    If you notice anything that does help, or hurt, with this problem, be sure to post it and I will do the same.

    Hayley, I love salt. Will try to eat even more to see if that helps. My BP is always low.

    XChocoholic, As I mentioned to Andrew, my blood sugar was a little high last time it was checked. As for B12, I do take a supplement every day, but have not had my blood checked for that. I'll ask them to check that, and iron, next time I see "Vampira".

    Thanks again to all who replied. I knew you guys would have some excellent ideas!

  6. mezombie

    mezombie Member

    It's well worthwhile to check out the free "Handbook for Patients with Dysautonomias" by the National Dysautonomia Research Foundation (NRDF), even if you haven't tested "positive" for this condition.

    It can be read online or printed out.

    Non-drug treatments are discussed starting on page 189.

    Here's the link:

    I hope you'll all find something helpful here.
  7. twerp

    twerp New Member

    I will definitely check out that site.


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